Communicating with Dementia Patients

I wrote this article for Type-A Parent (http://typeaparent.com/) and thought it was important enough to repeat on my blog. As the population ages, dementia is becoming a huge problem. And the woman in the article has found a way to communicate with dementia patients, even after they stop speaking.

Here’s a link to the article:

http://www.parade.com/health/2010/11/21-unlocking-the-silent-prison.html

It’s frustrating for grandchildren of any age to witness a beloved grandmother going downhill because of dementia. Unfortunately, lots of young people don’t visit their grandmothers because they’re uncomfortable with the disease. They often don’t know whether to attempt a conversation, or what to say when they do. It’s especially difficult for the young, because they usually haven’t had much exposure to dementia.

Well, Michelle S. Bourgeois, a speech-pathology professor at Ohio State, has come up with a method of making those conversations go a little more smoothly. According to an article in the November 21, 2010, issue of Parade Magazine, Bourgeois discovered that Alzheimer’s disease first strikes the part of the brain that controls learning and memory processes. But, because reading is a skill that becomes automatic, after doing it all our lives, patients are often still able to understand simple printed explanations.

For example, while volunteering for hospice, I had a patient who would ask about every five minutes when her daughter would return home. Bourgeois suggests using flash cards with simple messages printed on them. So I could have printed “Your daughter will be home at 6:00” in large letters. And in many cases, patients understand the message and stop asking so often. If they do repeat the question, simply tell them that the answer is on the card.

Reading can help even in cases of anger and anxiety in people with dementia. Bourgeois tells of a situation where the patient refused to shower. So her aide made a card that read, “Showers make me feel fresh and clean” and gave it to the patient when it was time to shower. It actually worked. Bourgeois said, “Even when dementia is so advanced that people cannot speak, they can read if the words are large enough.” She goes on to say that spoken words aren’t stored in memory, so they’re ineffective.

In another situation, Bourgeois tells of a patient who told her daughter, “You’re not my Susan.” So the daughter gave her mother two photos, with notes written under them. One said, “This is my daughter Susan at age three.” And the other note said, “This is my daughter Susan now.” When the patient looked at the two photos and notes, she replied, “As beautiful as ever.”

I am really excited about this and will definitely try it with my next dementia patient. I’ll also share the Parade article with my patients’ caregivers and the hospice organization for which I volunteer. (In the meantime, if any caregivers out there try this with a dementia patient, I’d love to know if it was successful.)
But I’m writing about it here, because it would be tragic for grandchildren to stop visiting grandmothers afflicted with dementia. Bourgeois says that people tend to treat these patients as if they’re not the persons they were, “But they’re still here.”

http://typeaparent.com/spending-time-with-grandmothers-who-have-dementia.html

Photo by: Charlmers Butterfield©
http://en.wikipedia.org/wiki/User:Sba2
Title: Elderly Woman

Communicating with Dementia Patients

The End of an Unhappy Life

A man with whom I used to work died recently. I read the obituary in the newspaper, and I felt nothing. Now that’s very much unlike me, since I cry at funerals when I don’t even know the deceased. But I’m not grieving for the person who died, the person I never knew. No, I’m crying for my friend or co-worker who lost a loved one, because I’m feeling his or her pain. But not in this case.

I briefly worked in John’s department, although, thankfully, not for him. The people who did work for him had to constantly tiptoe around his feelings of insecurity or risk an attack. They either kissed his ass to stay on his good side, or he saw them as threats to his authority and set out to get them. He was a classic bully, always targeting those who were vulnerable.

While I was there, he had three “whipping boys.” One was a defenseless little old guy who got so flustered over the constant public tirades that his face glowed red, until we thought he was on the verge of a stroke. Another was technically competent, but socially inept, and John would treat him like his best buddy one minute and then viciously abuse him verbally an hour later.

His third victim was actually a kindly older woman. She was fiercely loyal to John, until the day when a couple of executives from another company came in to meet with him. Apparently, a minor problem came to light, and John walked over to the woman’s desk and started shouting at her in front of the guests until she began to cry. He walked away from her with a self-satisfied expression, just short of a grin, on his face, like he was on a power trip.

I saw many of John’s ugly displays and had absolutely no respect for the man. But there was more. He had two sons, and when the youngest was in college, John and his wife decided they didn’t like his then girlfriend, who later became his wife. Nobody knew the exact details, but John and his wife cut off all communication with their son. And John seemed proud of the fact that they weren’t going to accept the woman into their family. Eventually, we heard that they were no longer speaking with their older son either. And the last I heard, they had grandchildren they’d never met.

I wonder now if John and his wife ever reconciled with their sons. Maybe his death brought them back in touch with their mother. And maybe not. All I know is that this is the first time I’ve felt absolutely nothing over the death of someone I knew. I actually think he made the world a better place by leaving it. How very sad.

The End of an Unhappy Life

Putting Off Seeing Someone You Care About?

I just returned from a funeral home, where I went to view a beloved uncle’s body and grieve with his family. A few days ago, he had a massive heart attack and never knew what hit him. He was only 73. Now nothing will ever be the same for his wife, adult children or grandchildren. And I cheated myself out of a post-divorce relationship with him and his wife.

Over 17 years ago, Rudy met another woman and left my aunt, who was devastated. She was also enraged, so much so that most of her siblings were hesitant to even mention my uncle. At least, that’s what I heard from my father. So I certainly wasn’t going to look him up, even though I really missed him.

Rudy was my dad’s younger sister’s husband. And to outsiders, they appeared to be a happy couple. I used to babysit for their two toddlers when I was 16, and I loved my aunt and uncle and their kids. I remember how Rudy was the life of the party. He was always in a good mood, always had a smile on his face. One of my fondest memories was how Rudy would come home from a party and get a pepperoni stick out of the refrigerator. (He was born in eastern Europe, and he loved sausages.) Then we’d talk, laugh and eat pepperoni slices ‘til my tongue burned.

Over the past several years, I’ve wanted to invite him and his wife to dinner at our house. But I didn’t have his phone number or address and couldn’t find it on line. I meant to call my cousin, his daughter, and ask for his number, but I never did that, either. And now it’s too late. This is the second time in about the past four years where I’ve intended to contact someone, but waited, only to have them die unexpectedly first.

So I’m writing this to nudge you into calling the people with whom you want to reconnect, before it’s too late. One thing’s for sure – I won’t let this happen again.

Putting Off Seeing Someone You Care About?

My Inspiration to Become a Hospice Volunteer

It seems like a lifetime ago when a neighbor I barely knew became ill with lung cancer. Although she lived next door, she was very quiet, and I didn’t know her, other than to wave occasionally as she walked to the bus stop.

One day, before I even knew that Paula was sick, a social worker knocked on my door. She told me that she was from hospice, that Paula was dying and that she needed me to bring her meals a couple days a week. Being a single mom with a demanding job, an even more demanding child and the added burden of college classes at night, I was more than a little surprised at the social worker’s request. But I did it and, over the next few months, became quite close to Paula.

On the last day that I saw her, I went into the house as usual, but the door to the dining room, where her hospital bed had replaced the table and chairs, was closed. Strange sounds were emanating from that room. I knocked, and an unfamiliar voice told me to come in. A woman I didn’t recognize was in a chair at the foot of the bed, and she was knitting. She was a hospice volunteer and was sitting with Paula while she was “actively dying”, a term that I’d never heard before.

I was so frightened by the flailing of her arms and the loud moans that I wanted to run out of the house. But the hospice volunteer kindly told me to take Paula’s hands in mine and talk to her. It took a few minutes for me to get the courage to reach for her hands, but I did, and I told her who I was and that I’d come to be with her. She calmed down immediately and became peaceful. It was a very emotional moment for me, and I believe it was the catalyst that led me to eventually become a hospice volunteer.

Ten years later, I happened to see an article in a local newspaper about a training class for Beaumont Hospital’s hospice program. My first thought was that I wasn’t sure I could sit with dying patients the way the volunteer had stayed with Paula that night. But remembering how it felt to be with her through the last days of her life, I decided to look into it. That was in 1999, and I’ve been with Beaumont Hospice ever since.

My hospice experience has enriched my life beyond measure. The patients and their caregivers have taught me so much about people, families and life in general. And I’ll never forget them or their stories. One woman had been a nurse in World War II. She treated wounded soldiers on a train that transported them from Normandy to hospitals. She was there on D-Day and told me countless stories about the injuries she witnessed. She also talked about how the nurses were allowed only one helmet full of water for their daily grooming needs. They’d start by brushing their teeth, then cleaning their bodies and then washing their underwear! I can’t even imagine making do with that. Another patient was an artist who showed me how to make a silver Byzantine chain, even though she was legally blind. I’ve been making jewelry ever since.

Being a hospice volunteer is definitely not for everyone. But if you think you’d be interested in helping patients have a peaceful end-of-life experience, consider becoming a volunteer. And if you’re in the Detroit metro area, Beaumont Hospice usually has a volunteer training session scheduled. Call Dennis Cole at 248-743-9405 for more information.

My Inspiration to Become a Hospice Volunteer

Melancholy Thoughts on Good Friday

On Good Friday, I stayed with my aunt (my dad’s oldest sister), who has Alzheimer’s, while my cousin went to church. My cousin, Shirley, has lived with and taken care of her mother for over eight years now and cherishes every second of their time together, even though her beloved mother no longer recognizes her or anyone else.

As I waited for Shirley to get home from church, I thought about the rest of my dad’s family. His four brothers and four sisters were all kind and decent people who enjoyed each other’s company. They were funny as hell and liked a good party, so I have lots of warm memories of holidays and reunions. But now only one brother and three sisters are left, and two of them have serious health issues.

The one to whom I am closest is my only remaining uncle (and his wife and kids), and I don’t know how I’ll handle it when he dies. That’s because I always wished that he had been my father. He is so many things that my dad was not. I love this man dearly and hope he has many more healthy years.

Thinking about my dad’s family makes me sad. It also makes me realize that I haven’t seen my aunt and uncle for a few months. So, given how quickly time slips past me, I’m going to visit them this week. Now I feel better!

Melancholy Thoughts on Good Friday

My Ex-Husband's Funeral

On Sunday, we attended my ex-husband’s memorial service. He died after a long and brave battle with cancer. We’d been divorced for many years, and he remarried, but we remained friends, and it killed me to see him suffer and die so young.

The service was difficult, to say the least. My son struggled over whether to give a eulogy. He wasn’t sure he could get through it, and he didn’t want to break down in front of friends and coworkers. But he did it.

He gave a beautiful eulogy, which was incredibly moving. At the end, he said, “I will always love him and will always keep trying to make him proud of me.” And as I listened to his words, I imagined his dad smiling with pride, as he heard his boy speak so lovingly in front of all those people. I am so proud of him. I don’t think I could’ve done half as well.

My Ex-Husband's Funeral

My Son's Father is Dying

This afternoon, I visited my ex-husband, who’s a hospice patient at a hospital downtown. My heart is breaking for him, whose life is being so cruelly cut short; for his wife and for our only child. This man, who, at 6’5”, towered over everyone else in the family, looks pale, too thin and at least 10 years older than his years. It hurt so much to see him that I almost looked away.

Just before I got to the hospital, the nurse had given him pain meds and a sedative, so, although he tried to respond to our words, he couldn’t. Garbled sounds escaped from his throat, as his eyes floated open and closed. My son, brother and sister were there with me, and tears were in all of our eyes. We touched his arm hesitantly, because the cancer that’s consumed his body makes touch painful. We said gentle, loving things to him. And we mourned, even though he’ll be here for a few more days or weeks.

Being a hospice volunteer, I comfort family members of patients all the time. But I don’t know exactly how to comfort my son, who never stopped hurting over the divorce when he was only five. I tell him he can talk to me any time, day or night, if he needs to, but he holds back. Maybe he thinks he has to be strong for me, while I think I have to be strong for him. I was the same age as him when I lost my mother. But I had four sisters and four brothers who shared the pain and agony with me. My son is alone. I just hope I can comfort him enough, while giving him the space he needs to grieve in his own way.

In the meantime, I want to visit my ex again. Although we couldn’t live together, I never stopped caring for him. To me, he became almost like another brother. And, because one of my sisters married one of his brothers, our families are permanently intertwined. My preference would be to see him for a few minutes with just my son there, like we did today after my brother and sister left and before his wife arrived. For a few precious minutes, we can pretend our little family never split in half and that we never broke our boy’s heart.

My Son's Father is Dying